barbraSeptember 14, 2013 at 7:38 amPost count: 160
When I needed some changes/adjustments on some of my meds I naturally called the Endo. Turns out that the Endo wants nothing to do with any meds that didn’t come from him. So I called the PCP, who had really thought that the Endo would take over all my care connected to the Graves, as I did. I know that a few calls went back and forth. I’ve only seen my Endo once and there was the phone call about the Levothyroxine after the last blood work and that’s the extend of his participation so far.
The RAI was done at the hospital by the Nuclear Medicine Endo there, who did a great job and followed up with two phone calls.
The PCP did the changes on my meds, thankfully.
So, what’s up with Endos anyway? From what I read on the forum here, a lot of them don’t really give a hoot, don’t listen and don’t keep up with their patients. And it seems I have one of those.
On my Endo’s door it says “Consultants”. Really? With whom are they consulting? It certainly isn’t with me. I’ve only consulted with him once, and unsuccessfully a couple of times with his office staff.
And he’s only “consulted” with my PCP once, also unsuccessfully.
But that must be why they are getting the higher co-pay and fees and I guess there are not enough of them around to teach a little humility.
I know that not all Endos are like that and I hope YOU have found one of the good ones.
Barbra.npattersonModeratorSeptember 14, 2013 at 6:43 pmPost count: 395
It looks like you need to get a second opinion. You need to ask when you call (unless you have already looked up the information at http://www.thyroid.org or http://www.AACE.com, if the endocrinologist specializes in THYROID. Those docs can usually tell you how many Graves’ patients they see a week! You live in an area that has many good thyroidologists.
NancyChristinaDeSeptember 15, 2013 at 8:44 amPost count: 115
My 1st endo felt a lot like what you’re describing. Had me in tears at times. Her practice was primarily focused on diabetics & she didn’t seem very tuned in to the things that thyroid pts may experience. Our relationship was difficult & at times I began to wonder if it was me. But I found a 2nd one that I really like (and yeah, it took MONTHS to get in to see her!!!). Her practice also deals w/ diabetes, but I can tell that she has a sincere interest in thyroid issues AND that she keeps up w/ new studies & articles PLUS really seems to listen to her thyroid pts. She’s the one that told me that the TSH lab range is arbitrary & too wide for most folks & that she’s noticed that most (not all) of her pts feel best between 1 & 2, so this is what her initial goal would be. If we got there & that didn’t feel right, she said we would then adjust off symptoms – even adding T3 if I needed to. I was sold!
A 2nd opinion seems like a worthwhile idea, even if you have to wait a few months to get in which can happen in some parts of the country. Having a good endo (one that’s good for you, that is) makes a huge difference & is worth waiting for! Makes this whole thing so much easier, so much less frightening. Plus you just get better quicker!
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